Anyone interested in any small way in free speech, might want to read the latest posts on the CarerWatch blog. A site that provides support for carers as well as sick and disabled people, who's private, members-only, forum was closed down last week without any warning or explanation. ATOS Heatlhcare, the private company who conduct work assessments for the government, asked the American hosting company to close down the forum, seemingly without directly contacting CarerWatch - a moderate, intelligent, campaign group. http://carerwatch.wordpress.com/ The matter is now under discussion.

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It’s enough to make you want to poo yourself Here is some moreThe true story of Sarah Westley, a brave young girl claiming her right to live and die with dignity. Sarah's Last Wish is already changing the system... http://www.sarahs-last-wish.com/The site is worth a visit as they say a picture tells a thousand words… http://www.sl-webs.com/deesillustration/home.asp

The French sterilization case highlights something far more common than we might wish to think. I've got a vague memory (damn butrans fuzziness) that there was a UK case via the Court of Protection within the last few years (and given how secretive the Court of Protection is...), there were certainly cases in Australia, and as for the US case where the parents wanted to stop their daughter's growth to keep her at a size where they could manage her.... (No, sadly that last is not a joke and was an absolutely serious proposal).

It's a tremendously difficult situation if someone could potentially be sexually active without the intellectual capacity to understand it (or to say No!), but we need to ensure that steps like sterilization are the absolutely last resort.

WRT the mobility scooter proposal, I have to wonder if it also included chaining the elderly to the mobility scooter, or if it came from yet another person who thinks mobility difficulty = can't walk at all!

What i find hard to digest is the fact that if you are classed as disabled and claiming benefits then you can not even have a life and yet that is what we crave on a daily basis. Its hard not having any social life because of your disability friends seem to be more distant and yet we are to scared to even go to the front door just in case. I would like no i mean i want to have my old life back work, friends etc etc.. so that i do not have to worry about anyone watching me or telling tales. I guess i have not fully come to terms with my condition but how can i when i am being persecuted all the time, its a sad world we live in.

Every generation has to fight the same battles as their ancestors had to fight, again and again, for there is no final victory and no final defeat. Two flames have burned from the beginning of time – the flame of anger against injustice and the flame of hope

@David G, about "the US case where the parents wanted to stop their daughter's growth to keep her at a size where they could manage her.... (No, sadly that last is not a joke and was an absolutely serious proposal)."

It sounds really bad, but is not as bad as it sounds - at least in one respect.

The daughter, Ashley, suffers from a very severe developmental disorder - her cognitive level is that of a 3 MONTH old baby. She was, when this issue hit the headlines, 9 YEARS old. Her position is not going to change.

There were people talking about how even the most profoundly disabled people should not be denied the joys of sex and parenthood. But a 3-month-old brain cannot consent to sex - even if she developed adult ovaries and an adult womb, any sex with her would have to be categorised as rape.

So she is now, and will remain, someone who spends all their time lying on a pillow being fed and changed and sometimes taken out for an airing. At the time when her parents decided to act they could still look after Ashley.

But they were going to grow older as well, and as Ashley got bigger, they were going to get less physically strong. Ashley, like other little babies, liked being cuddled by her mother, and occasionally fussed over by others. But looking forward to a time when she was as big as her mother, this sort of relationship was going to change.

Of course, this was in the USA, and so the amount of help available to Ashley and her parents depends very much on their circumstances. If they have the right sort of help, then perhaps they could have kept looking after a 3-month-old baby who happened to be the size of an adult, but less physically adventurous that even a 6-month old baby - she doesn't move around in bed or reach out for things. More probably they would be left to cope on their own, or put Ashley into an institution.

So Ashley's parents made some hard choices and decided to keep Ashley in a situation where they could keep caring for her at home. There she would still be loved, looked after and kept safe. The nightmares of what might be done to a girl who was physically mature, but totally unable to understand or communicate what was done to her formed part of the background of their choices.

I can see how this sort of precedent forms a nightmare for people who feel that someone with "developmental issues" could have their body mutilated for a parent's convenience.

I would ask, though, that those who are revolted imagine themselves with a daughter with that level of physical disability and that level of mental development, but with an adult size body, with some adult physical reactions.

Would you not see a future where she would need to be moved to a place with facilities and staff needed for an adult, whose own parents are ageing. Would you not be afraid for her?

Imagine when she gets too big to lift, too big to cuddle, too big for ageing parents to look after. Imagine too how limited your options would be without money. Would you not be tempted to try to keep the situation manageable at home for as long as you could? To try to keep the body in some sort of synch with the mind, not the calender?

When I first heard this story my thought was that they would be better of in the UK where proper caring would be available to her, regardless of parental income. Now I rather doubt it would be.

Wikio

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.